http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1693
Mon, 04 Aug 2008 20:28:50 +0000PunBB 1.4.2http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9115#p9115
The worse sickness he's had has been from the chemoembolization. All the procedures are hard on his body. He has little to no energy. He's very sick after each IV chemo for about a week and then has a couple of good weeks before the next injection. He's on disability and hasn't been able to work since 5/07. But all in all, he doesn't regret anything he's tried and he has a good attitude, which has to be at least half the battle. Just a side note: We get Charlie's Ensure from our local Cancer Services free of charge. Those little 6 packs are expensive and really add up so this is a great service. They give us 3 cases each time - 1 vanilla, 1 strawberry and 1 chocolate. I think Charlie likes them all about the same. I'm sure there are other good Ensure/Boost protein type drinks available. See if you can get your Mom to try some of them. I hope it helps her.

Ensure would be great for you mother to try being that she has no appetite although it makes my fiance sick. I have been buying a protein powder with muscle mass builder and I make him smothies. He tolerates that pretty well. You can make it with fresh fruits like Banana's, strawberries, watermelon, milk, ice cream, mix it up a little bit so it's not so boring. Our oncologist said that with this type of cancer, he recommends high amounts of protein on a daily basis. As much as he can take in.

Wishing you the best, Christina

]]>Mon, 04 Aug 2008 20:05:08 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9114#p9114http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9112#p9112
That's great news Carol. With those treatments..... how has he reacted to them (side effects)?

She's not tried Ensure, but I thought about asking her to try it sometime. Do they have different flavors (some taste better than others)?

]]>Mon, 04 Aug 2008 19:53:49 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9112#p9112http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9111#p9111
Yep, Charlie's still kickin'. He was diagnosed 5/07 Stage IV, age 51, given 3 to 6 months to live. 14 months later. He started with many weeks of Gemzar chemo only last summer. It did nothing for him, but wear him out. Went for 2nd opinion at UNC. They pretty much said the same thing except when presented to the tumor board, a surgeon there decided he wanted to do liver resection. Had chemoembolization to try to shrink tumors, it didn't. 11/07 over 1/2 of liver removed, clean margins. Recurrence of tumors 1/08 in the liver only. Had radiation and Xeloda, radio frequency ablation in April, zapped 1 tumor, but others too big. Now on oxaliplatin IV chemo and Xeloda oral chemo. So far, no growth. Has a scan coming up in a couple weeks that will tell us how effective this chemo is. If there's shrinkage, good, will probabaly continue it. If not, other chemos to try, does Charlie want to continue chemo, other procedures - theraspheres or cyberknife? Lots of questions. Charlie has never had jaundice.

I'm so sorry for what you all are going through. It's so hard. Has your Mom tried any of the Ensure type drinks? Those help Charlie maintain his weight some or at least keep him from losing too much. Best wishes.

Carol

]]>Mon, 04 Aug 2008 19:45:28 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9111#p9111http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9110#p9110
Carol,Thanks, I guess it's just natural to wonder. As far as we know, my mother only has it on her bile duct and liver at this point. But the liver has several large tumers on it. I never heard back from Duke, but I did speak to a Dr. at UNC Linebarger Hosp. She only advised that they could try some different type of chemos that my mom doesn't want to try. She apologized and said that this being such a rare cancer, there's just not a lot of funding to do trials and research. She said that she knows that doesn't help my family and she wished that there was more they could do. I've sent her records to Dr. Byers Shaw at the Univ. of Nebraska, haven't heard back yet. We'll see. Close to giving up here. I just wish she had an appetite. She ate about 4 bites of watermelon for the whole day yesterday. She does like soft drinks some.... and who am I to discourage that. Anyway, I'm just left with some new thoughts that hit me from time to time.

Carol, I'm kind of new to this board, so Charlie is still alive and it's only in his liver? Does he have jaundice? And if so, how long has he had it and how extreme is it? My mom is very very yellow.

]]>Mon, 04 Aug 2008 18:56:09 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9110#p9110http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9109#p9109
Charlie was diagnosed in May 07 stage IV also. The vague answer we got was "Who knows how long the tumors had been sitting there growing to the point to cause trouble?" When you get a question for a question, they definitely don't know. From my own research, I think it could possibly be years coming on to the point it presents symptoms. Here's another puzzle: Why do some spread and other have no mets? Charlie's is still contained in his liver as far as we know. Lots of wondering going on. I hope your Mom is doing okay. Did you decide to look at Duke or Chapel Hill? Best wishes to all of you.

Carol

]]>Mon, 04 Aug 2008 14:37:28 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9109#p9109http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9107#p9107
Not that it really matters or anything now, I guess it's just natural to be curious as to this. But has any research been able to find out how long this cancer normally grows before it is diagnosed or symptoms arise? My mom is already in stage 4 as of 2+ weeks ago. So I'm left wondering, how did this start and when did it start? Does it take months to grow and spread, or is it years, or does anyone even know? We just wonder how it started and how long she's had this cancer spreading in her. Anyone know about this certain type cancer?]]>Mon, 04 Aug 2008 12:41:19 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=9107#p9107